Ontario is vowing to streamline autism services by creating a special panel of experts to guide the province’s next steps in treating a growing number of people with the brain disorder.

Children and Youth Services Minister Laurel Broten has recruited eight experts from across Canada to provide the latest counsel on how to develop policies and deliver programs.

The blue-ribbon committee will be at arms-length from government and it will report to her within weeks, Broten told the Star. Going forward, the team will then decide on “topics of their
collective choosing,” she said.

“We need an ongoing committee of experts who the government can turn to, who MCYS can turn to, for advice and expertise so we can stay on top of issues,” she said. The official announcement will
be made Thursday.

It is believed one in 88 children in Ontario are on the autism spectrum, a neurological disorder that traps children in their own minds, unable to communicate, socialize or reach their potential
without expensive intervention treatment.

The Star’s Autism Project highlighted the severe lack of services for children and adults with autism. It documented
stories of autistic youth who were sent to homeless shelters due to a lack of treatment space and even adults who were incarcerated for minor offences.

The investigation also exposed huge variations in wait times for treatment, depending on where you live, with some families having to wait more than four years or go broke spending their life
savings to pay for the prohibitively expensive treatment.

“The series the Star has done is an important one to bring back attention to the complexity of the issues,” Broten said.

“I always say I understand the challenges faced by families, children and youth faced with autism spectrum disorder but we don’t walk in their shoes . . . I am determined to make more progress
for them,” she said.

Autism is the world’s fastest growing developmental disorder and scientists are struggling to understand what factors interact to cause it. Just two years ago, the rate was one in 150.

Since the Liberals came to power in 2003, they say they have quadrupled funding for all autism therapies, spending $186 million in expanding applied behaviour analysis (ABA), benefitting 8,000
kids in new services.

Broten originally promised to form a steering group two years ago.

Chairing the new body is Dr. Ian Dawe, an associate professor of psychiatry at the University of Toronto and the physician-in-chief at the Ontario Shores Centre for Mental Health Sciences.

“He’s a father, a clinical expert and very passionate on how we need to keep doing better for kids with autism,” Broten said.

Noted autism expert Dr. Wendy Roberts, co-director of the Autism Research Unit at the Hospital for Sick Children, is the vice-chair of the group.

Each will serve for a term of one year. Also on the team is Susan Bryson, Dalhousie University’s Craig Chair in autism research; Dr. Lise Bisnaire, director of the autism program at the
Children’s Hospital for Eastern Ontario; Dr. Kelly Boyko, a psychologist at the York Region District School Board; Irene Drmic a psychologist at McMaster University; Dr. Rob Nicolson, an
associate professor at the University of Western Ontario, and Jonathan Weiss, an assistant professor at York University.

Beginning this Friday, families will be able to appeal to an independent review mechanism regarding their child’s ineligibility or discharge from provincially funded intensive behavioural
intervention therapy, normally one-on-one treatment provided between 20 to 40 hours a week.

“It will allow us to ensure we have consistency, fairness and transparency in decision-making,” she said. The review body will be co-ordinated by Contact Niagara, a non-profit agency funded by
the ministry.

News of the panel was well-received by the autism community.

Autism Ontario’s Marg Spoelstra praised the government for appointing a “high quality, skilled” body but cautioned autonomy will be key to its success.

“Will they be able to report with candour to the minister about matters affecting program supports . . . and to think about the evidence, to speak about impact, to speak about both the
celebrations and the challenges that come from any program funded by government?” she asked.

Spoelstra hopes the panel balances its advice with the experience of families. It is regretful the body took two years to form, she said.

The Star “reminded our leaders that people are paying attention; that the numbers are real,” she said.

Accurate, early diagnosis is key to reaching autistic children and placing them in line for treatment.

Sick Kids Dr. Stephen Scherer, who is spearheading a global effort to decipher the genetic codes of 10,000 autistic children, said the Star series made him an even stronger believer that the
system needs science to pinpoint early diagnosis.

He’d like to see the panel recommend more genetic counsellors put in place to help families.

“With all of our work in the genetics of autism and more general in human genetics, our group alone could consume the handful of genetic counsellors that the University of Toronto graduates each
year,” said Scherer, who is also the director of Sick Kids Centre for Applied Genomics.

“The panel should strive for no less than establishing Ontario as the leading jurisdiction in the world to raise a child, or be an adult, with autism,” he said.

Toronto father Tapan Mitra hopes the panel ensures children with autism don’t have to wait for therapy as long as his 5-year-old non-verbal son Anan, who has been waiting for three years.

Anan will finally get help in January, but the ABA program provides just two hours of therapy twice a week until March. “I’m not sure it will be enough,” Mitra said.

Mitra is also worried about his younger son, not yet 2, who will be screened for autism in March. “I hope he won’t have to wait that long for help.”